March 14, 2022 at 7:22 pm
I contacted GBS-AMAN 41/2 years ago and still have difficulty walking and lousy balance. My neurologist has told me at my last visit this might be as good as I’m going to get. Hands and legs are still weak with drop foot on my left foot. I use AFO’s on both feet when ever I go outside along with a cane. They help me with my balance and help with lifting my legs. I cannot stand without swaying for more then a few seconds. Other then these distal problems I’m pretty healthy. At 75 years old I feel fortunate that I am self sufficient and have learned to adapt to my new life style.December 23, 2020 at 12:57 pm
In september of 2017 I got GBS while traveling in Spain. Within days I was completely paralyzed and diagnosed with AMAN. It was determined that I got this from a Bacteria. I got my first flu shot a few months ago; no side affects. I am planning on getting the covid-19 shot as soon as it’s available. By the way I was 70 when I got this and I am only back to 60% of normal. ( Who needs working hands and lower legs anyway!)February 5, 2020 at 3:39 pm
Thanks Jim for the info. I am thinking of going to see Dr. Lewis at Cedar Sinai. Do you know of him?January 25, 2020 at 11:10 pm
I am starting my 3rd year with AMAN. In 2019 I had 7 IVIG infusions but I don’t think they helped at all. My history is as follows: while traveling in Spain in 2017(70 years old)I woke up one morning with a heaviness in my legs. That evening I fell down and couldn’t get up. ( no pain at all) my legs didn’t work. I was taken to a hospital in Spain and a neurologist on duty gave me a quick exam and started me on IVIG that evening. I didn’t know what GBS was! By the next day I lost the use of my arms and hands but my breathing remained stable. I spent two weeks in the Spanish hospital not understanding what was wrong with me. I assume I would wake up one morning and walkout. I had all my sensory nerves working, no pain at all. After two weeks they advise me to go back to the states, California. I went straight to a local hospital,(on a stretcher) where they did more tests and concluded that I had GBS as the Spanish doctored had noted. I spent three days in the hospital and then I was moved to a rehab clinic. Here they said I was hopeless and sent me home after 20 days. No PT. My insurance company, Kaiser, said they couldn’t do anything for me. Being on Medicare I changed insurance at the beginning of 2018 and begin getting in-home PT. Finally some hope and movement. As of January 2020 I can walk with lower leg braces and a cane, cannot do stairs and my hands are a mess. My question is this as good as it gets? My doctor keeps telling me to be patient. I’m 73 and running out of patience. I want to walk and use my hands like a normal person. Will my nerves ever regenerate? I’ve tried to stay positive these past 27 months but I am running out of gas!March 11, 2019 at 3:02 pm
I got GBS while traveling in Spain; fell flat on my face one afternoon and went directly to a Spansh hospital. A neurologist was on duty and diagnosed GBS that very evening. ( I didn’t even know what GBS was and assume I would wake up the next day OK!) They started me on IVIG the very next day for 4 consecutive days. My arms and legs were paralyzed but I guess I was lucky since it did not affect my lungs. I was never in any pain.
Other then the language barrier the Spanish doctors were great. (I returned to the states after two weeks) I didn’t start regaining any movement for for almost four months. I am now in my 17th month and I can walk using a walker. My hands are still a problem as is my lower legs and feet. I have no pain but tire easily. My neurologist uses one word, “patience”. My advice to you is don”t give up. I am 72, was very active, and if it wasn’t for family and friends I would have said good-bye a year ago. I’m starting another round of IVIG and hopefully I might see some additional improvements soon. What else can we do?December 15, 2018 at 12:12 pm
I was diagnosed with AMAN 13 months ago at the age of 71 while traveling in Spain. The spanish doctor started me with an IVIG treatment that very night. I lost the use of my legs and arms overnight but I believe the IVIG treatment kept the disease from my lungs. After two weeks I was transferred to the states and was retested again with the same diagnosis; AMAN! My insurance company and doctor put me in a rehab center and I was told I was a hopeless case. I laid in the bed for 3 months with very little PT. Thankfully my wife and kids researched AMAN and talk to Doctors throughout the country. All said that another IVIG or PE would not help; the only thing to do was PT and OT as often as possible. As of today I can walk with a walker, feed myself, shave, bath, etc. I still have PT 2-3 times a week. My legs are still weak as are my hands but getting stronger. MY suggestion is PT/OT and because you are much younger your recovery should be much faster. There is a lot of info on the internet about GBS/AMAN. You will make it through this.